My daughter has narcolepsy
Posted 19 October 2007 - 02:28 PM
She has to go take a sleep test still and be put on medicine.
How do you deal with it with a kid that has narcolespy?
Posted 19 October 2007 - 06:13 PM
Posted 19 October 2007 - 08:12 PM
take care, Kim
Posted 23 October 2007 - 12:13 PM
Posted 23 October 2007 - 12:44 PM
Nice to hear that you are going to the conference. We cant make it this year unfortunately but if you ever need to talk we are here. We havent been to a conference yet but hopefully we can go next year.
Keep in touch. - Kim Foster
Posted 23 October 2007 - 01:18 PM
Posted 23 October 2007 - 01:38 PM
Posted 23 October 2007 - 07:59 PM
I am glad to see that there are parents out there who are proactive about getting their children the medicinces and drs. that they need to help them lead a happy functional life. My advice would be to stay positive when speaking to your children about their conditions and try your best to empathize with what they are feeling. There are going to be days that they feel their symptoms more so than others, and days that even medication they are not going to be able to fight those symptoms either.
And I know that there are days when you as a parent will get frustrated with your childs symptoms as well... just please try your best to explain to your child that it is ok to be frustrated as well, but it is ok to keep your smile as well. My mother made the mistake for years of calling me lazy and stolid and that killed me cause so many years and a diagnosis later my mother thinks it's all still imaginary... and her favorite thing to tell me is that I am Lazy and with out a memory... which kills... to this day.
Your child will forget things he/she didn't mean to forget, please do not tell them they are forgetfull but rather ask them kindly to return it to it's place.
your child will fall asleep at a concert in the park or in a crowded ampitheater, or on the ride home in the middle of the day; please don't tell them that they should try harder to stay alert on and that they are being rude.
your child will miss play time some days because they are in the nurses office sleeping, nauseous from fighting their sleep attack, please do not tell them that they are faking symptoms for sympathy.
There are days when it's easy and you wonder why the hell you are so awake... until you sit down.. .then it all hits you. There are days when you are exhausted and you cant sleep at night cause you slept too much that day. There are days when you have nightmares night after night and their intensity gets worse. There are days when you feel you cannot wake up at all. There are day when really all you need is a hug and for someone to understand that no matter how much you are interested in what is going on your eyes will have to shut and your body will force you to rest... somewhere all we need is a place to rest our weary head.
so please the best gift you can give your child aside from medications, is empathy and understanding, because it is ok to be so tired.... because after all we are not lazy we are just tired.
we can play sports and we can have fun we can smile and we can laugh even though our knees might give... lol. we can work and some of us can still drive. we can be functional members of society. remember it's the passive situations that make it worse... stimulation keeps you motivated to come around this 'disability' and embrace it as part of your entity.
Posted 24 October 2007 - 06:13 AM
Posted 24 October 2007 - 03:18 PM
Posted 02 November 2007 - 03:27 PM
We are in the UK, and are struggling at the moment. Feel rather alone as she is so young.
She has hallucinations and eds , she is not on medication at the moment. Ritalin has been suggested.
She is expected to have another mslt soon.
She also has been diagnosed with underactive thyroid (AI), and is on thyroxine.
We find that with regular sleeps and coke to drink at school she gets by. She tends to 'fall off the wheel ' at home, tired etc.
Trying to 'live with it', rahter than let it control what she does.
Please contact if you relate to any of this!
Posted 24 November 2007 - 11:19 PM
Posted 25 November 2007 - 02:43 PM
Posted 30 January 2011 - 11:00 PM
I would be happy to talk to you Melissa! I am the one that wrote the NN newsletter article on my 9 year old son. We have tried many of the stimulant medications. Give me a shout and we can discuss.
take care, Kim
I dont remember that article . how do i get a copy to read... my on is 10 now and we are trying effexor 75mg and provigal 100 mg, takes xyrem at night .... what do you think gina